ICU

We are in ICU and settled in, as settled in as you can be in ICU. Kyle is doing well for what he's been through. His epidural is working very well and that is helping with his pain control. Poor kid has a total of 3 IV's, a central line, a GJ tube, a urine catheter and a bile bag hanging off of him and he's being amazing. He has been a little confused and quiet but that is also to be expected. He had some blood pressure issues during surgery but we are keeping a close eye on that and so far so good. He's pretty puffy and working hard to breathe but that should improve over the next few days. His surgeon is amazing and is very hopeful that this latest surgery should be very helpful for Kyle. His plans are to be aggressive with his gut and to start pump feeds this weekend, we will know at that point if this surgery was a success...

Thank you as always for the support and the kindness so many of you have shown our family and Kyle...

XO
Kate

Update on Kyle

Hi everyone, this is Kate's friend Carissa. She just wanted me to update you all and tell you that he is still in surgery (as of 5 pm EST) but things are looking good. They don't know a lot of details yet, but they definitely found intestinal issues and were able to fix them. They are now taking out his PICC line and putting a new central line in for him. They were also able to take a liver biopsy and were told that compared to a lot of kids they see on TPN, his liver looked pretty good, so that is a blessing. They are told that Kyle himself is doing awesome - like we had any doubt! He is truly a fighter.

Please continue to keep him in your thoughts and prayers and they finish up the surgery and transfer him to the ICU. I know Kate, Mark and the family truly appreciate it.
Kate will try to update when she can!

He's in

Kyle was taken into the OR around 1. 2 hours late, but we are used to that...he was so very brave. None of this gets easier, after making the trip to the OR more times than I can count I still feel sick when I walk out those doors leaving him behind. We have tried to prepare him as much as we could but that wasn't easy. The surgeon told us to expect that this surgery will take hours. I will update as soon as I can. Please continue to keep Kye in your thoughts in prayers.

XO
K

Night Before

The boys have been playing alot together today...close play, I actually tried on purpose to just let them do their thing....

Having to explain the next week to Alex was brutal, she is so much like her Mother, she's going to be with family in her own house but she is still so nervous and worried....

Please keep Kyle, Alex and Jack in your thoughts in prayers over the next few days...

With Gratitude

Kate

Enjoying the quiet

I have been over the last few days trying to literally savor every moment...I can feel the tension as each day slips by...and I know that I've said to Mark over the last 2 days ...please let time slow down. I am not looking forward to Monday, as I have said 100 times I know in my brain that this surgery must be done, that at this point it is our only chance at getting Kyle off the IV TPN and move him forward but in my heart I can't stand this. For 5 years I have felt that failure feeling ( I know my MOD friends are going to jump all over me here) like I should have been able to protect him more...I drive Mark nuts...every time we go inpatient or we meet a new dr we get the same question, "so why was Kyle born premature?" What most don't get is that it's like a knife in the chest...and as hard as I try every time I get that question it makes my heart ache all over again. Kyle was a preemie because my body failed him, I know..I know...but it hurts. While we were meeting with the surgeons in Boston one of them looked at us and said, this is not all prematurity related there is something else wrong. My brain started to scramble and I could feel myself start to panic, while we have always known that Kyle's medical issues are not all prematurity related it was hard to hear that there is more going on here. For years we were told that Kyle would outgrow his prematurity, so many dr's telling us how lucky we were that Kyle was still with us, that with everything he has been through he still is so forgiving...so kind, so sweet.

I was talking to one of Kyle's dr's the other day, we were talking about next steps and treatment plans, I started to cry...and of course instantly apologized. She was of course amazing, and said...."Kate it's ok.....it's been 5 years..."

It has been 5 years, and I can't say I wouldn't change some things...but I do know I would never change who Kyle is and what he's taught me. There are days that this all seems like to much, and then I hear his giggle or see his sweet face, and it's energizing. He is energizing.

xoxo

K

More info coming

I wanted to jump on real quick to let you all know we are home, and are trying to relax for a few days..I was reminded this morning that I should send out a quick update...I'm sorry...I got caught up in the thrill of havng my babies all sleeping in their own beds in their own house! We head back to Boston on Monday for Kyle's abdominal surgery, they have told us he will be in ICU for days and will need to stay in Boston for a while. I will update later tonight or in the am with more detailed info.

xo
K

conflicted and confused

I should start with the scope this morning went perfect! At this time they see no need to operate on that area in his esophagus..they don't want to mess with it. This is good..yes it could come back to haunt us years down the road but for now he's safe to move forward as far as that is concerned! Which is a HUGE relief.

After the radiologist reviewed all the films from Maine he is not convinced there is a hernia in his bowels. He wants further testing done. This is tough to swallow. While we don't want a major surgery for Kyle, we were holding on to hope that these worsening issues Kyle has been having are not because his bowels are not working but that his hernia needed to be fixed and that once fixed his stomach and bowels would start working again. We also were told this morning we could go home tomorrow with a surgery date of Monday....it seems now with all the testing we won't be going home tomorrow. We also received his muscle biopsy results but they are confusing us also and we are waiting to have them read....

I will update as soon as we have any info.
K

Here

We are checked in and settled at Children's. Wow does this make me miss our familiar MMC. I know that this is where we need to be but I feel so far from home tonight. My sister is due any second and my brother is having his second back surgery as I type this. It's that familiar ache of wanting to be in 10 different places at the same time. But again I know in my brain this is where we need to be...but my heart aches.

The plan is to take Kyle into surgery around 10 am. Once we have the scope and the dilation results we will be able to make a better plan for him. I will update in the am.

xo
K

liver enzymes

Kyle's dr here called and after chatting with her for a few minutes and talking about his tube and belly pain I heard her clear sigh a little and I nervously laughed and said...Oh your not calling for a check in are you? No....his liver enzymes are WAY up....up to high for him. She made an immediate change to his TPN and said we need to address this in Boston tomorrow. It's so clear that Kyle's body hates the TPN...we all hate it. But he needs it now..we can't even begin to put anything into his poor belly...the kid has been miserable for 2 days...so Boston is now even more important. I know we are in safe hands...but I hate this. I hate all of it...I want someone to magically fix this...not exactly the most mature approach...but for this minute I don't want to be.

I will update when we get all settled in tomorrow...

Thank you...for support, love and most of all understanding.
K

I hate being right.

Seriously, I do. Ok, maybe the only time I hate being right is when it involves Kyle. That poor sweet boy had a horrible day yesterday, spent most of the day laying on couch watching the kids decorate the tree...he tried to put a few things up but was more content to lay with me on the couch. He was having horrible stomach pain and it doesn't seem to be much better today. I have emailed the GI dr here but I know they will want us to push thru until tomorrow. So today will be spent trying to keep him as comfortable as we can. He was warm this morning but no fever.

Yesterday he was on my laptop playing and I was watching some TV, there was a man in a hospital bed laying there quiet. Kyle looks at me and says..Momma I not go to the hospital anymore, right? I didn't even know what to say....he knows we are going to Boston but we call it Boston, not the hospital...I'm not looking forward to the conversation tomorrow morning. Poor kid. This is probably the 4th time he's asked us that question since coming home from the last stay....I wish I could say NO Kyle...NO more hospital.

xox
K

Something is off

I can tell I'm holding my breath, always waiting for the other shoe to drop, checking Kyle's temp over and over everyday. Each morning that I go into his room to unattach him from all the vital tubes he needs at night and I hold my breath, scared that he'll have a fever, another infection and we will have to immediately head to the hospital. I need him to get to Tuesday. This morning no fever, but an increase in work of breathing and his color is off....fills me with dread. His bile output has been up all week. No major increase last night, so while he's still way above normal it's now staying about the same.

We are decorating for Christmas today...we usually make a huge deal about it the day after Thanksgiving but since we won't be here I want it done before we go. I want Kyle to see it all and for him to feel good about it. I want Jack and Alex to decorate with their brother...I want to feel my families happiness before we separate again.

xoxo

K

Busy

I have tried to blog for 3 days now and it seems like every time I sit down someone needs something. ;) Kyle's been struggling with the antibiotics he was on for his central line infection they did some pretty bad things to his bum area and we are still trying to get him past that. I have never seen anything like it. His bile output has increased alot and his g tube site area is inflamed, I worry that this is usually a sign days before that a fever is coming but I'm praying we can just get to Tuesday and not get stuck in the hospital up here. I think I'm avoiding thinking to much about next week. I keep telling myself that missing my birthday and Thanksgiving with the other two kids is no big deal, that we need to focus on getting Kyle better, but there is a piece of me that is so sad that the kids won't be with us on that day. We've missed so much as a family....
Alex got her report card yesterday and it was amazing.....that kid is truly a wonderful kid...started a new school, our Make a Wish trip got cancelled one day before we were supposed to leave, her brother being in the hospital for most of her first semester of third grade and that child pulls off an amazing report card...she continues to amaze me.
Jack is Jack....what a blessing he is. He's been doing a great job at distracting his brother and keeping him smiling.

My new blog is coming soon....one of my bf is creating it..she's been working so hard on it. I can't wait to show it off! :)

xoxo
K

Boston

So we heard from the surgical team at Childrens....looks like we will be spending Thanksgiving in Boston. We will be heading down early next week and have a day of inpatient testing. The next day the team will perform a gastroscopy and get a real good look at his esophagus and stomach. This help them figure out esophagus issue. They will then try to dilate his esophagus a little bit and bring him back out. Because things are so messed up in there he will have to be admitted to ICU for monitoring. Hopefully the next day (depending on what they find) they will perform the hernia repair in his bowel. They are still somewhat unsure of how to fix it this time, the location of the hernia is in a horrible place and located very close to his aorta. Of course right...

So sadly Kyle will have to be opened up twice, from his belly up to his throat. It's going to be a difficult few months. The plan is to let his body rest from the abdominal surgery and then try to fix the esophagus.

That's all for tonight, I feel very lost tonight. Heavy heart....I'm so tired of this for him. We've seen the bowel surgery before....4 times before. So we know what we are in store for. I'll keep you all posted as we get more details.

K

So we begin again.

You know every time Kyle overcomes another hurdle I feel myself slowly let out a breath. It's been so long since I updated I should give you an overview, although like I said before..if your still reading this blog boy are you loyal. ;)

Kyle was born on October 27, 2004....my sweet little second child who came into this world to early and very weak. Kyle spent the first nine months of his life in the NICU literally fighting to breath. No one at that time could figure out why our little 33 weeker was so terribly sick. Kyle has never eaten by mouth and was entirely g/j tube feed. His lungs during the NICU were so bad it was at that time to dangerous to feed him by mouth for fear of further damaging his lungs. He was tested for all sorts of different genetic issues and passed them all. We finally were released to go home and we left the NICU with 2 Nissen surgeries, a g tube, oxygen, daily nebulizer treatments, loads of medication and really no answers. Kyle up to this point has had a very rough few years. He continues to be unable to tolerate feedings thru his stomach and after lots of testing we have discovered that his stomach does not work. He also has for the second time in his life a very aggressive hernia in his bowels that we hope is the cause behind his increasing feeding intolerance. At this times Kyle is completely TPN dependant and relies on a central line to keep him nourished. During our last hospital stay it was also discovered that Kyle has surgical material in his esophagus that somehow has made it's way from the outside of his esophagus to the inside. It has been there so long that it has created a false track inside and needs to be repaired. Both of these surgeries are major surgeries and will require both of Kyle's abdomen and his chest to be fully opened. The hard part is that his abdomen has already been opened 4 times...complicates things even more for him.

Thru it all....our sweet little middle guy is the smartest, kindest, most wonderful boy you could ask for.

We are at this point waiting for the final proposal from Childrens in Boston. We have submitted a muscle biopsy and are awaiting those results. It is believed that Kyle may have mitochondrial disease of the GI system.

I have clearly glossed over so much of the last 5 years, but I truly try to not look back...only forward. Kyle has fought for his life so many times that I know he'll fight this next battle just as strongly.

Fingers crossed we should have the final game plan tomorrow.

Kate

I'm coming back

Ha....ok If your actually seeing this...boy are you loyal! I'll be back soon! I am having my blog re done and I'll be back to blogging! :) So stay tuned!